Spring 2013 Rads

lemon68

Sneakychiquita- Thank you for your words. I am sorry you didnt get to make a choice. I certainly know although I dont feel it right now that I am lucky. You just reminded me and I needed that. I hope you do not need to do the rads, you have been though enough. Let us know what happens for you.

I feel the bond here and the love, thanks all of you. I always know I can count on a ear to listen, a shoulder to cry on or a friend to laugh with, priceless..much love xo

RMlulu

Hey there TuxTails!



Thanks for checking in:). So happy that you are healing...thanks for letting us know that skin keeps reacting after last rad...helps to know what to expect...my not be what we want to hear but there is hope...skin does heal. ))

Hoping yours is a speedy recovery...(((hugs)))

Cindy

SherylB

Well I started my radiation on Tues. The worst part for me is I have to drive an hour each way for about 5 minutes on the table. They tell me that SEs should show up around 2-3 weeks. I am starting to put cream on my skin before anything shows up and keeping myself well hydrated. I will be having 30 tx with 50.4 Grays.

Hugs to all, Sheryl

BookWoman

Sheryl, I hear you about the long drive for just a few minutes on the table--mine wasn't quite as bad--only about 45 minutes each way. Here's hoping you will get through without too many SEs.

I started Letrozole yesterday. I don't want to scare anyone, but I declined Tamoxifen two years ago for DCIS in the left and ended up with tubular in the right. So this time I will go ahead and give hormone treatment a try.

adagio

lemon - how is the skin today? Tell us what you are doing to help it. Must be a relief not to have to drive there every day!!! Now your energy goes into healing - eating well and keeping well hydrated!! I drink coconut water occasionally to give me a break from the regular water - it is quite a pleasant change.

adagio

whatshesaid - not quite sure what your nurse meant about you being two thirds done. Surely with only two treatments left you are almost completely done!! Hope your breast is feeling a bit better now - let us know how you treat the burns - we all like to learn. All breast cancer treatment is a gamble and we each do what we think is best for us. I don't think your oncologist would hold it against you for not taking the last two treatments. Good luck with your decision regarding the final two treatments. Healing thoughts coming your way.

april485

Amy, the boosts are the same amount of grays, but they concentrate them directly to the tumor site/lumpectomy site instead of the whole breast you have been doing so that is why they call them boosts. I am having partial breast rads, 1 week dose dense, 2 x a day, 6 hours apart only to the lumpectomy site and 1.5 cm's around the perimeter so in essence I am having 10 boosts with no other stuff. Mine will be a total of 38.5 for the whole week divided by 10 tx's so 3.85 each tx twice each day. I am a little nervous for sure!

Lemon and whatshesaid, hoping that your breast is getting better!

Sheryl, that is a long drive. I have 45 mins each way...I thought that was bad! LOL

Counting down the days now. A week from Monday and I will be joining you. Most of you will be done or getting there by then. Hoping you stick around to listen to me vent/whine! LOL

Hugs to all...zip zap as Cindy likes to say! xo

whatshesaid17

The gel pad I got yesterday was the best thing to happen in weeks. Its called Kendall Aquaflo hydrogel wound dressing.  I can't post a pic here, but you can just google it and find it easily.

It immediately improved the blister situation considerably. amazingly. wish I had gotten it sooner.

One big mistake that I made last weekend was to try and temporarily cover one of the blisters while using the prescribed cream (nystatin and triamcinolone acetonide cream) where some skin had peeled away, using a guaze bandage with adhesive. Even though the adhesive made contact with skin that looked perfectly fine and was not sore, it caused that skin to blister and peel anyway. 

I highly recommend the gel pad.  The nurse said some people store also it in the fridge between use so that it cools the skin more when applied. The gel pad is reusable. Just wash and store.  I believe she recommended wearing it for 3-4 hours, though I don't know if there are prohibitions against wearing it longer.

I know that if you use any creams that are not water-based, it can cause the skin to burn more, so I followed advice on using prescribed RadiaGel Hydrogel.

between full-time work, 2 grad classes, treatment, and going into radiation with extremely low ferriten level/15 (stored iron, ideal range is between 40-60 ng/ml), I have felt fatigue (a much deeper form of tired) but am able to rest often since I work from a home office. I've had two job interviews during this time too - one near beginning and one just this week. Can't plan when these offers come along...

Thankfully, I'm usually pretty healthy, but I did deal with a virus symptoms for about a week and developed a beautiful cold sore cluster that likely heralds upcoming PMS and period. haha. so there's that ...but that's pretty standard when I'm run down. When I do get run-down or sick, its usually a perfect storm of "virus, cold sore and period" all at once. Just listing symptoms, no complaints here.

on the bright side, I've had some really productive days lately too, when I feel a lot more like myself. Focusing on diet and hydration right now because for several weeks I really had no appetite and knew I was not drinking enough water, so didn't do myself a favor letting those essentials slip. 

Once I overcome fatigue and clear the fogginess that sometimes settles in my brain, I may feel more inspired to research and make upcoming decisions.

For now, just doing the best I can, and that is ok by me.

following up with oncologist next week. haven't done BRCA testing yet.

Leigh22

Well I got back from the RO this afternoon and he recommended radiation. I'm glad I prepared myself for it. I had thought that after 6 rounds of chemo and a bilateral mastectomy that I wouldn't need rads. Oh well. He said its because my clear margin was not wide enough... I think it was .9 mm, one sentinal node had a tiny amount of cancer cells, and he would have liked to see more than 7 axillary nodes taken...(I had one sentinal Node positive out of seven..... He wanted to have at least ten nodes taken out.).



I go for the initial appointment May 9th and start getting rads the following week. He said he's going to do my left chest wall and a small part of the left axillary nodes, but not by or above my collarbone. I'm glad I found this thread... Everyone seems so nice and I know I'll appreciate help in getting through this.

Leigh

Lisa1637

Welcome, Leigh!!!

You'll pick up alot of helpful information here as you prepare for your start...xo Lisa

Sallyann

I did #10 out of 36 rads today & had an emotional meltdown on the RT bed. Crying and drooling without moving one millimeter for 15 minutes lying on my belly with my arms stretched out over my head, my left breast hanging into an empty area, my right breast stretched away and flattened, all the weight of my body settling into the center of gravity, my top left rib, just below the breast. Like a dull knife pushing against the rib and I'm heaving with self-pity, horrific memories of my mother's ribcage where I cuddled as a little girl curling up in bed with her early in the morning. It's 1949, I am 3 years old and my mother has survived a radical mastectomy that has left her left side over her heart scraped clean of all flesh. It is normal; it is my mother's body and I never once mentioned anything about it to her.

Nothing was ever spoken, my mother never once in her entire life of 70 years mentioned the cancer or the surgery. I am BRCA positive, Jewish and am planning an oophorectomy as soon as possible, prophylactic surgery to remove the possibility of more cancer. This is a curse and my rage, anger, and emotional upset is intense at this very moment. Every day I tell the technicians that this is not fun, that I hate it, and then I smile at them and always tell the sweet young girls that it absolutely beats the alternative.

The manager of my RT center is a magnificent woman, who has lost 2 sisters to cancer. She holds my hand and tells me how much she admires me, how strong I am, how I am entitled to lose it and cry, and I feel blessed to know her.

I also acknowledge how fortunate I am to live in a time when mammos, surgery, radiation, and women who talk to each other exist. 

lemon68

April- We will all be here cheering you on, offering a shoulder or a good laugh dont you worry.

Adagio- Thank you. Today is no better than yesterday RO said it would continue to radiate for 5-7 days. I am taking my pain killers and advil. My husband is shocked to see how black my underarm has become, the blisters there are now opening. My arm was numb from the SNB but the feeling had about come back. I noticed yesterday my inner arm is now numb down to my elbow, very swollen and tingly. I am sure just one more SE of the rads.

as I sit here now I have a cold tube sock wrapped around my boob so the underneath doesnt rub against skin. Its not skin to skin as there is no skin there. What is there is dark brown with pink patches. My side has no split open. I cannot describe how bad it just hurts. And I never knew how many times my boob got hit while just doing normal daily things. If we could come up with some type of "Boob Basket" that is soft soothing and hydrating we would all be millionaires. Ideas?  Emotionally today I am better, my boss sent a huge box of goodies with a note telling me I handled all of this with 'grace', meant the world to me to hear that. And DH came home with roses and daisies today. I feel so damaged but loved, we all need that.

whatshesaid- I tried to not do my last TX, they said I had to do it either then or the next day. They were not willing to let it go. The RO said they dont have stats on only doing 15.  I think they felt I was already getting off easy.

Welcome Leigh, You have been though so much already, I hope this is easy on you and then you have time to just heal. xo

RMlulu

Hi y'all



SherylB - congrats on tomorrow is day 4:). Ugh your drive, can you find appointment buddies? Company is nice or books to listen to help relax or take mind off the zaps? Take good care of yourself...hydrate,moisturize,nutrition, and walk if you can oh and sleep...wow that's a long list. You will do well...sending healing thoughts.

April - your 5 days are coming! You got this! Zip zapXzip zap you're gonna finish before me and make history for BC sisters! Prayers coming your way nights warrior!

Whatshesaid - wow thanks for the encouragement and sharing...will emu oil then cause me to burn...sure takes the itch away. Glad you are feeling better and appetite is back:)

Leigh22 - glad you are here and prepared. Now enjoy the time you have before rads with family and friends. Sending strength & laughter your way:)

Lisa - rockin rads and counting down:)))

Sallyann - welcome & congrats on 10/36. This cancer sucks...I'm so sorry about your mother's can ER and not speaking...my grandmother was dx when i was in 1st grade which sent my mom into deep depression...never forgot its impact on our lives. And now me...ugh, but I'm thankful for care that is available now...much improved. My rad team is great:) makes all the difference.

Lemon - sending cooling healing thoughts...brave warrior! XO

Adagio - counting down and tomorrow is Friday and we get a break...healing:)

Hope all have a good night and great TGIF! (((Hugs)))

Cindy

adagio

Cindy - thanks so much for all the words of comfort and cheer - you're the best!!! Wishing you speedy healing also and a nice break on Saturday and Sunday. Let me guess you have done around 22 treatments -yes? 

Lemon - ouch, ouch, ouch!!! My heart goes out to you - sounds awful. Continuing to send healing and cooling thoughts your way. Just breathe deeply and get through one day at a time!!

Sallyann - what horrific memories for you from your childhood - wishing you healing for that also. Mothers are so precious. Allow the tears to flow - there is healing in tears.

Whatshesaid - please keep us updated on your progress and what your plan is regarding your last two treatments.

Lisa1637

Thank you for sharing such a tender memory, Sallyann!

It's as if cancer will never have a beginning and end.  And in some ways that's okay.  Our ties are deep.  Cancer is about so much.

I, too, allow myself to experience all the emotions, including the tears and meltdown.  I try to shield it at times when I don't want to load others up or make them worry.  Yet, putting it out there makes it real.  And I think to be brave is to be real. 

You are very brave. xoxo Lisa

Lisa1637

I love this thread!!!!

Happy Friday to all you wondeful ladies!!!

Here's to a calm and comfortable weekend!!!  Wishing healing for all!!

xo Lisa

april485

(((Sallyann))) Cry honey! We need to let it out cause if we bottle it up (as I have been doing) it can be toxic to our spirit. I have not had a good cry since my diagnosis. I don't know why I can't. I walk around with a perpetual lump in my throat. I have been prescribed Wellbutrin and I can't even bring myself to take it. Ugh.

Cancer is horrific. It blows my mind that they can do so much these days but still have not found a cure for this shit. Bottom line is too many "pink" products and some fat salaries but still not enough money going to research a cure.

I am angry that I have cancer. I had cancer in my 20's (carcinoma in-situ of the cervix) and I thought I was good for life. Why would I get it twice? That is just not fair imho.

Anyway, I appreciate that I can share with others that "get it" and that is the only silver lining here the way I see it.

Destina

Sallyann, what a beautiful, bittersweet, heartfelt post. Thank you for sharing, you touched my heart. This is such a challenging journey both physically and maybe more so, emotionally. I'm sending you love as you walk it.

Destina

Lemon, you've been on my mind as you're coping with your challenging side effects. I'm right beside you, sister. My armpit also turned black after the completion of rads. Looked and felt like charred meat (very gross, I know). It is peeling slowly, and I am keeping it very lubed up with aquaphor these days, not just at night. I have a small raw spot at the lymph node incision, but the rest is just very, very tender so I'm babying it completely with the moisturizer. I have a raw patch under my breast where it hits the chest wall and that is taking its time to heal, still pretty raw but not as painful so it's moving in the right direction. I read that it can take weeks for new skin to grow since the radiation has damaged the skin cells to the point where they stop growing. Just have to wait it out, but know that you're not alone in this challenge.

I also just read a study comparing the short course which you & I had to the standard 5 weeks + boost. This was a ten year follow up showing the same efficacy, but significantly lesser side effects due to the lower total dose. The shorter course is already pretty standard therapy in Canada and Great Britain. This may not cheer you on, as I know you're suffering. But I'm glad you didn't get an even higher total dose.

And I'm so glad to hear the support you're getting, too. It's very helpful. One day at a time, and trust that you/we are healing!

SherylB

Ladies, TGIF, 2 whole days off. So sorry for all of you who are struggling with issues whether emotional or physical. Praying for peace and relief. Have a wonderful weekend, do something to make yourself feel special. For me it will be taking a good walk and hopefully sitting by the lake.

Hugs, Sheryl

Sallyann

A thankyou hug to all Spring 2013 Rads and grads and a sweet tear of solidarity for all who endure the fear, indignity, fatigue, weirdness, and ironic gratitude to radiation therapy. Although I hate the prone position (lying on belly with breast hanging and ONLY breast gets the rads, I am grateful that it is available, as it almost negates any heart and/or lung involvement and future danger to either.

So far at 10/36 my skin is normal but the rad fatigue is ever-present, even after first dose. I told the tech girls that I'm like the Princess and the Pea and I feel things way more intensely. I don't think it's emotional at all; I am just  "lucky" ha h a, as if, to be one of those people way up on the scale of radiation fatigue. I sleep 9 solid hours (let us bow our heads in awe of Zolpidem), wake up refreshed and raring to go, eat well, walk a lot, use my brain (quite friendly with my brain/body continuum) and then the eyelids droop and I'm on the nod from rad fatigue.

My RO says it's unusual and says maybe it's the Synthroid you take for Hypothyroidism? In my overactive mind, I say:"Why don't all my specialized doctors take a weekend together and discuss my health in complete detail. They can pick up their own bills on what my insurance is paying them. I'll sleep in the best room in the B&B, have round-the-clock maid/masseuse service, a private chef, and they can report to me when they've figured out that they don't know why some people get radiation fatigue intensely and some don't."

Then I get dressed, put toothpicks under eyelids and go home for a well-earned nap.

Anybody else getting fairly intense radiation fatigue on a daily basis?

adagio

TGIF - another week has gone by. Two days off from driving to rads - yeah!! I am 13/20 done - skin is getting slightly pinkish/red and the armpit is a bit tender. Planning on lots of moisturizer over the weekend and some pampering of the breast. 

Healing thoughts and prayers to all of us going through the radiation - one treatment at a time - is my new motto!!! Enjoy your 2 days off .

Sneakychiquita

Sallyann - Your writing is fantastic.  I shed a few tears with your first post here and truly appreciate your take on things.  Keep posting!

I feel the love between you ladies lately.  Healing thoughts for you all this weekend.  Out of curiosity, has anyone tried frozen cabbage leaves on the breast for temporary cooling relief?  I just remember my midwives having me do this when my milk was coming in and I found the coolness wrapped around my breast to be such a wonderful thing at the time.  I suppose anything frozen would work, but at least the cabbage leaves won't stick to any lotions and potions we put on ourselves.  

Today is my CT scan so I suppose I'm doing this... but I can't say I'm at peace with this next step in treatment yet.  

RunFree16

Lemon, wow, you really are in it all the way.  I hope it gets better pronto.  I had a doctor tell me recently that skin burns often get worse for a while after finishing rads, but then they get better all of a sudden.  However, it sounds as though the skin doesn't improve abruptly in all cases.  I've got my fingers crossed that yours will.

Destina, thank you for being open.  I want to know what can happen and where it goes from there.  I hope your last raw spots clear up fast.

Sallyann, I echo what others have said.  It's very sad to hear about your meltdown, but it's an honest and important reaction and I am grateful to you for sharing it here.  I've had a few.  One was when I read about all the possible sexual side effects, especially of chemo.  I cried for an evening and the next day, because that is a lot to take away from me and even more unfair to my husband.  Also, a few weeks after I was diagnosed, I found a book my dad gave me--he died suddenly in 2002--which he'd inscribed, "To my magnificent daughter."  Suddenly I thought, "If he were here now, he'd realize I'm not magnificent anymore--I'm damaged."  Cried for hours.  Believe me, I know it wasn't rational or true, but just part of processing this sense of my body having been compromised by something hostile.  I was thinking about this episode again today and I found I don't feel damaged anymore.  I think I just had to pass through that fiery gate as I considered what it all means.  Also Sallyann, I am a bit envious of your face-down rads.  I'm doing breathhold to protect my heart but nobody offered me a facedown position.  Maybe I'll ask my RO about it.  She's a little young, hadn't heard of breathhold before me, but I like her.

I am 15/30, half done with rads today!  Made it to rads/PT and back before the ice storm hit here in NH.  So far so good.  My skin's a little pink, but if anything my breast and nipple are less sore than they were a few days ago.  I lube the boob twice a day with aloe jelly, and now have other products on hand in case it gets worse.  I haven't had much fatigue yet, although I crashed for 2 1/2 hours last Sunday afternoon in a way I considered suspicious.  I am a chronic bad sleeper so I too love Zolpidem.  Walking every morning, 20-30 minutes, also seems to help stabilize my sleeping.  Unfortunately I have been staying up too late catching up with work (grading, class prep for teaching) because I'm having trouble juggling my work, various appointments, kids/husband, and vital media therapy like here on BCO plus email & Facebook & phone.  Today I started PT to help avoid lymphedema, extra important because I'm getting axillary radiation.  My treatment arm proved to be a bit compromised so I'm glad I'm doing this, though it complicates things for my drivers. 

My other news this week is that I don't need chemo!  I wrote about this drama on a thread in the Chemo forum called something like "Oncotype score 13, MO still pushing chemo," which I'm about to update.  I have so much admiration for all the chemo warriors.  I'm sure I could ultimately have handled it, but I was very scared and really hoping to avoid it, and my second opinion team agreed that it isn't indicated for me. 

May the weekend of sleeping and healing begin!

AmyfromMI

Sallyann, thank you for sharing. I felt every word and shed a few tears. Please keep posting.



RunFree, you're half-way there. Congrats! And no chemo! That's awesome news. I'm happy dancing with you! 😃



I'm 20/30 today. I have 3 more full breast rads and then 7 boosts. I am so looking forward to this experience ending. I'm doing well overall so I really can't complain. My skin is intact and that's all I ask at this point. The rest of the side effects I can handle. I think it really helps having an awesome rads team. I couldn't have asked for a better group of people and for that I am truly grateful. 😊



Sending healing and comforting hugs to all. I hope everyone has a relaxing, peaceful weekend.



Amy

Cynthie

Friiiidayyy!!  (Actually, my Friday is over haha!)

Lemon, I'm working on your "Boob Basket" for you  ---how about a sort of halter top with some crossing elastic straps in back, but no band in front.  Or maybe a very soft band or a band made out of hydrogel pad material. Shaped a bit in front with darts on the outside?  Or maybe...

I feel for you all who are suffering horribly and I'm also sooo afraid of joining you in two weeks... <inner shriek>

Sallyann, are you a famous author?  Your words are so expressive!

I had a breakthrough on Wednesday with one of the ROs!!  He came in the Kabine after rads to check out the Girl and I started asking him questions.  Twenty minutes later, he was still going strong with his frank and open answers. He admitted that no one knows how beneficial the last five or six Gray are ("probably not extremely important in comparison to the overall course of radiation"); shrugged with a little grin when I suggested that in 3-5 years Germany would be following the UK or Canadian protocol (betcha they're planning the switch already);  said that no meds or creams can prevent rads damage, only soothe for a while (agreeing with our "rad onc" on the other thread).  He also stated that procedures are different in every country, depending a lot on what the "customer base" demands.  "Forty years ago, German women just stoically bore their radical mastectomies and massive radiation---they'd been through the war and weren't into careers or sports.  Now it's better, women are insisting on improving techniques."  (Freely translated---and his Bavarian accent could be sliced and served as Weisswurst!)  Apparently, rads fractionation in France is very different too---they zap only one area per session, so it takes much longer (with more overall Gray but fewer SEs?).  He showed me all the printouts of my mapping, what areas get what zaps, how the integrated boosts work etc etc.

Next time I'll ask "Whaddup with POWDER and stupid markings and no washing??"   

Beddybyebye!  Have a great soothing healing weekend everyone!!

glove

am 25 down, 3 boosts down, finish final two boosts tuesday.  it hasn't been fun, but it hasn't been as hard as i thought it would be either.  the hardest part was getting my head in the game i think.  the skin breakdown has been pretty textbook.  fatigue also.  honestly, there have been no surprises, everything they said could or would happen, has happened.  sometimes 3 in the afternoon can feel like midnight.  in the eves is when the fatigue really hits.  i asked my husband the other eve if he would carry me up the stairs i felt so tired.  he said 'i can try' ---- ha!!  i said i can do it, i just wanted to see if you would!  but that's how tired i was.  it's a punchy tired.  i asked him to rate how he thought i did during rads, all things considered, on a scale of 1 - 10.  he gave me an 8.  i said i'll take it.  i'd give myself an 8 too.  

lemon68

I want to list each of your names but was afraid I would miss someone, I cannot express to you the warmth and love I feel from each of you. I feel like I have my own personal therapists helping me heal everyday. As I read your posts today I cannot stop my tears. They are part of the silver lining of this horrible disease to me, it brought us all here, we dont want to be here but if we werent we wouldnt ever know the kindness of strangers behind a screen. The realness of love and caring here.

I just told my husband " we are all a bunch of HOT messes!"

Cynthie- I like the boob basket , your onto something. If the bottom band was like a cooling gel like in a tube oohhh it would feel soooo good. I have on a tank backwards tonight, I cut the side so my underarm wouldnt be strangled.. not so attractive but its working for me.

xoxoxo

MMSS

Happy Friday everyone! I never knew just how important a day could be. It seems like the effect both physically and emotionally is cumulative and by Friday I have pretty well had it. The effect this has on my GI tract reminds me of early pregnancy when you feel constantly queasy and eat because you know that you need the nutrition and to keep from feeling worse but actually feeling hungry is a far distant memory.

Cindy, if the breast center where you go is smart they will hire you as their CMO chief morale officer. You have a real gift and we are all blessed by it.

Special thoughts and prayers to all who are having such terrible skin problems. It is painful just to read what you are going through. What amazingly brave sisters!

I am betting that five years from now women will be getting much less radiation than we are getting. It seems that the history of cancer through the years has been one of starting out with "shock and awe" treatments and gradually working backwards to less is just as good. Surgery is much more conservative than it used to be and now with the Oncotype DX test many women can escape chemo or have lighter protocols but radiation is the last guest to the party. The research is coming from the countries where they have a financial incentive to find out what the minimum effective amount is. It makes me mad when they say "well we don't have statistics on that." Of course one reason why we don't have the statistics is because thanks to our medical legal climate in this country doctors are terrified to deviate from "standard of care" for fear of getting sued. God bless the Brits and others who are working hard to get the answers so in the future women will suffer less.

lemon68

 I have a question, what does the radiation do to our lymphnodes? My underarm is badly burnt/raw and swollen and lumpy. I could see my lymphnodes when I had my SNB they were so inflamed, they look the same way now when I raise my arm I can see how huge they are. I know that means they are doing their job but dont they get fried?

thanks